Falling Out of Care and Black Women's Access to HIV/AIDS Treatment

The second in a series examining the reports of a pediatric "functional cure" and its implications across Black America. In Part 1 we asked whether a Mississippi infant supposedly cured of HIV actually had the virus at all.

Reports of an almost 20-month-old Mississippi infant who had been "cured" of HIV dominated news coverage during early March 2013. But much of the coverage around the case lacked context.

"This mother did not receive any prenatal care and learned that she was HIV positive during delivery," says Vanessa Mills, executive director of Empower "U," one of the first Black HIV/AIDS community-based organizations in Miami. "The mother and infant received regular care and treatment for 18 months -- but then they dropped out of care and treatment for 10 months."

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Making and Keeping the Connection

Connecting people living with HIV/AIDS to appropriate medical care and treatment as soon as possible -- a concept known as "treatment as prevention" -- has become a key strategy in ending the epidemic. The Mississippi case has become a cautionary tale about access to care and treatment for Black women -- especially in the South, which has seen the largest increase (pdf) in new infections in the United States.

Blacks represent only 13 percent of the nation's population but account for about 44 percent of all new seroconversions, the Centers for Disease Control and Prevention (CDC) reports. Almost 40 percent of Mississippians are Black, as are more than three-fourths of the state's new HIV infections.

"So it's very likely the mother and newborn were Black," notes Bambi W. Gaddist, Dr.P.H., founder and executive director of the South Carolina HIV/AIDS Council.

But connecting the newly diagnosed to care is just one step. As the Mississippi case demonstrates, keeping them in care can often become a difficult challenge. A new model known as the "HIV treatment cascade" illustrates how many people in one community, country or group are actually receiving the full benefits of the medical care and treatment they need and are thus suppressing not only their viral load but also the overall community viral load.

"Only 25 percent" of the more than 1 million individuals in the U.S. "who are living with HIV/AIDS are making it all the way through the HIV treatment cascade and achieving viral suppression," the CDC reports. "African Americans and younger people are the least likely to be in ongoing care and have their virus under control."

Infection rates among Black women are nearly 20 times higher (pdf) than those among White women; however, new HIV infections among Black women decreased by 21 percent between 2008 and 2010.

Because mothers are generally HIV tested and treated during their pregnancies, mother-to-child transmission is extremely rare in the United States -- there were only 162 cases in 2010. But of those cases, more than 60 percent occurred among Black women.

These data underscore "the importance of testing during pregnancy, especially for Black women," says Mills. "It also demonstrates the critical role of prenatal care to Black women. Low birth weight and increased infant mortality rates are very prevalent in our communities."

"Black women have the highest unintended-pregnancy rate of any demographic," the Guttmacher Institute has reported. Women whose pregnancies are unintended often delay prenatal care, affecting the health of both the mom and the fetus -- and increasing the risk of mother-to-child transmission if the mother turns out to be HIV positive.

Blacks are also more likely to be "late testers" and to be diagnosed with HIV far into its progression, as was the Mississippi mother. Less than two-thirds of HIV-positive people in the United States begin care for their infection within a year after diagnosis, according to the CDC. Black men and women are also more likely to "drop out of care" after an HIV diagnosis. Again -- just like the Mississippi mother.

"Many people have blamed the mother for her child being placed in that position. We need to ask, 'What could we have done differently to ensure the mother had prenatal care?' " says Dr. Gaddist. "We don't know if the mother had access to care. Access doesn't necessarily mean 'if' care was available. Access means, 'Did she have a ride to her appointment?' Since the mother lived in a rural area, the answer could be no."

Blacks account for 50 percent of HIV infections in rural counties, according to the Rural Center for AIDS/STD Prevention (pdf). "That makes it more likely that the mother could be lost to care," says Dr. Parker. "There are fewer hospital and clinics, as well as poverty and transportation challenges."

"There is also the stigma of being HIV positive and attempting to access care -- especially in a small town," Dr. Parker continues. "Many positive women feel uncomfortable going to these clinics or hospitals. They may have to worry about gossip and could become victims of domestic violence."

Rod McCullom has written and produced for ABC News, NBC and Fox, and his writing has appeared in Ebony, The Advocate, the Los Angeles Times and many others. Rod blogs on politics, pop culture and Black gay news at rod20.com.

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